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With compassion and imagination, ALS patient preserves voice

With compassion and imagination, ALS patient preserves voice

With compassion and imagination, ALS patient preserves voice

MICHAEL NEARY

Nov. 11, 2017

https://www.apnews.com/6a52b2a1ec6a4722bb739cc5478c4de2

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MERIDIAN, Miss. (AP) — Voice has always played a strong role in Cille Norman's life.

"I'm a natural teacher," said Norman, who lives in Newton, and she speaks in soft expressive cadences that travel to the furthest corners of her life — to when she was counseling a student, for instance, or to when she was marrying her husband, Richard.

In the summer of 2016, Norman was diagnosed with amyotrophic lateral sclerosis, or ALS, a terminal disease that encroaches upon many bodily functions.

"It's a disorder of the nerves that tell the muscles what to do," said Dr. Daniel Larriviere, medical director for the Ochsner ALS Center in New Orleans. He noted that the impaired functions ultimately include speech — which means that patients must at some point communicate without the use of their natural voices.

A few months ago, Norman completed a process of recording her voice through the Ochsner Voice Banking Program. It's a program that, as Larriviere explained, allows patients to create digital audio files of their voices that they can draw upon later, through computerized devices, after they lose the ability to use their vocal cords.

Patients of the ALS Center — at the Ochsner Center for Primary Care and Wellness in New Orleans — are offered the opportunity to participate in the Voice Banking Program, a volunteer effort run by medical students from the University of Queensland — Ochsner Clinical School.

"The first thing I wanted to do was save my voice," Norman said, recalling her diagnosis at the Mayo Clinic in Rochester, Minnesota. "The thought of not being able to say, 'I love you' to my husband and my grandchildren and children was heartbreaking to me."

Larriviere said patients spend several sessions with the medical students running the program, recording about 1,600 phrases that cover various components of speech and sound which can be re-assembled by software called ModelTalker. The service is offered at no cost to patients at the ALS Center.

Later, Norman said, she will need equipment allowing her to manipulate, with her eyes, text that's converted into voice. The equipment is necessary because she no longer can use her hands.

Norman said her voice will also be made available to other people who have lost their speaking abilities, whether they've experienced a stroke or ALS or some other condition.

Another granddaughter, 17-year-old Anna Grace, was asked at a local beauty pageant whom she admired most and why. Anna Grace named her grandmother, explaining, Norman said, that "she had taken a bad disease and given voice to other people."

Discovering a gift

Norman, 62, was born in Newton, and after she married about 43 years ago, she moved with her husband to Madison, where they lived for more than two decades before returning to Newton in 2001. By that time, she'd earned a bachelor of science degree from Mississippi College in sociology and psychology, with a concentration in grief therapy and crisis intervention.

"At one point in my life, back in the '70s, I taught childbirth classes and helped moms have babies," she said. "There were times when babies didn't make it, and that always pulled at my heartstrings."

She said she'd also experienced deaths even closer to home, sparking her to realize that she had the ability to counsel, to bring solace, to people who are mourning.

"I saw good deaths, and I saw hard deaths," she said. "It was a God thing. I found I had a gift for that kind of work."

Eventually, Norman explained, she came to work as a teacher and then as a counselor at Newton High School, in the Newton Municipal School District. She earned her master's degree from Mississippi State University in school counseling.

The issues she encountered, as she counseled students, ranged from academic to deeply personal and even tragic. She said much of the counseling she did involved students' personal lives.

"People tell me I have a servant's heart," she said.

A new angle on the gift

Now, Norman explained, she has to work on accepting service from others as she loses her own physical abilities. As someone who's always been a caretaker, accepting help does not come naturally to her.

"I ask God every day, 'How can I serve now? What can I do?'" she said. "It seems that the way that I can serve is by talking about ALS."

She said she wants to let people know the "realities of ALS," which she described as arduous. She said she's lost the use of her hands, making it necessary for her to rely on other people to do every day personal tasks.

All of that, she said, has prompted her to think about service in new ways. In a sort of paradoxical twist, she's able to serve by accepting other people's service — by allowing them to experience the grace of helping someone else.

"The blessing comes to you from giving service," she said.

But it's still not easy.

"I've had to learn to let other people help me, and that's been hard," she said.

Gatherings and stories

As Norman has experienced the disease, her immense compassion has stayed intact — and possibly even grown. So has her imagination.

While she was entering voice samples at the Ochsner's ALS Center, she read a number of assigned passages from or based on published works, including "The Wonderful Wizard of Oz" by L. Frank Baum, later made into the famous 1939 film, "The Wizard of Oz." It was an oddly appropriate passage since it tapped a story that for years has seized Norman's imagination. Norman even once saw the revered ruby slippers, from the film version, at the Smithsonian's National Museum of American History.

Norman draws upon "The Wizard of Oz" as she grapples with the disease.

"When I first found out (about my diagnosis) I was depressed," she said. "But I thought, I'm not just going to wait to die. I could buy a plain simple wooden casket, and instead of having wine and cheese parties, we could have wine and sequin parties — and we could (decorate) that wooden casket with red sequins. Wouldn't that be fabulous? And so then my daughter Jennifer said, 'OK, Mom, if you do that, then I'll make stepping stones and put gold glitter on them out to the gravesite and put up a sign that says, "Follow the Yellow Brick Road," and then we'll put a sign on the gravesite that says, "There's no place like home.'''"

Norman added, with a chuckle, "We decided that anybody who wears red glitter or sequins to my funeral gets preferential seating, and the very last song we're going to have at the funeral is going to be 'Somewhere Over the Rainbow.'"

She said she also wants "It Is Well With My Soul" played at her funeral.

"Because it is," she said.

Norman said she's also enjoyed warm celebrations in the last year or so, such as a massive party of about 250 people — including musicians — who gathered at her home. Her husband and her daughters, Jennifer and Jill, have helped to create these festive assemblies, and she's noted tremendous support from Newton United Methodist Church, where she's a member.

She also mentioned a birthday party recently, rife with flying monkeys and other touches from "The Wizard of Oz." It's a story that she's been thinking about a lot lately.

Norman said her fondness for "The Wizard of Oz" is, in some ways, not exactly related to her desire to preserve her voice. But she also suggested that her connection to the story really is about voice since the story speaks to her heart — and lately, it's been speaking to her in powerful ways.

"It really is about how the simple things are the best," she said. "It's also about sacrifice and giving. Dorothy has to choose to leave her friends to go back home. They're the ones who receive the gifts, and she gets to go back home."

And then she mentioned the ruby slippers.

"Those red shoes," she said, breaking once again into laughter. "They're just beautiful."